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  • Update....FINALLY:)

    Written Dec 2, 2013 2:47pm

    Hello to all of our CaringBridge friends and family!  Hope you all had an amazing Thanksgiving! 

    My mom, Karen, and I took Zachary back to Arkansas Children's Hospital last week.  He had an appointment with Dr. R at the Vascular Anomalies clinic on Monday, and an appointment with Dr. S (Craniofacial Orthodontist) on Wednesday. 

    Dr. R was very thorough.  We discussed the outcomes of Zach's last surgeries, and what he felt the way ahead was.  Zachary believes it is time to try another laser surgery, so Dr. R scheduled him for a second interstitial laser, along with lasers to treat the surface of his face and inside his mouth.  While he was checking out Zachary's nose, he discovered the left side is completely blocked.  They believe that the weakening of the nerves in that area have caused his passage to cave in.  With that being said, he strongly suggested that he do surgery to correct it.  He also talked about going back in Zach's face to shave (contour) the bone that has overgrown under his deep scars.  The contouring would help to give Zach's face a more proportioned appearance.  While he would have Zach's face opened up, Dr. R would use the interstitial laser to zap as many parts of the malformation as possible, with little to no damage to his muscles/nerves.  Once completed with that, he would be able to cut out the deep brown scars, and give Zach a bit of a facelift.  The lift would remove all traces of the deep scars, and even better, help alleviate some of the pressure that the malformation puts on his jaw and facial structure. 

    We all agreed that the laser surgeries and surgery on his deviated septum were a necessity, however, decided that it should be up to Zachary whether or not he did the other procedures.  After taking the weekend to think things through, he decided that he would get it all done at once.  They have scheduled all of the surgeries to take place on 7 Feb 2014. 

     

    Dr. R also had a hearing test conducted because Zach has been complaining about hearing loss in his left ear.  The test determined he does have some hearing loss in his middle ear, but he assured us it was nothing to be concerned about.

     

    We went back on the 27th to see Dr. S and pick up Zach's "snap-on" smile.  The snap-on smile was ordered to protect Zach's teeth from further damage from the malformation until he is old enough to have the surgeries required to fix his jaw.  We were excited to finally get them.  The bottom fit great, however, the top was not a perfect fit.  They decided to put some glue on his teeth to help the appliance stay in place...unfortunately, by the time we got back home, it was already falling out.  I contacted the hospital on Friday and this afternoon, but haven't heard anything back as of yet.  I am assuming we will more than likely have to have the top re-fit.  His smile looks great when it is in, and will hopefully give his teeth the protection they need from any further damage. 

     

    I want to thank my mom for taking time off of work to accompany us to Little Rock:)  

     

    I also want to thank all of our remarkable friends and family for continuing to be a part of Zach's journey.  We love you all!

    **If you have a Facebook account , please follow us @

    My Left Face (https://www.facebook.com/myleftface)

    We started this page because it allows us to post photos from all of his procedures. 

  • Written Aug 27, 2012 10:44pm

    Good evening! 

    As most of you know we were back in Arkansas from 13-17 Aug for surgery and two other appointments. 

    The trip was a whirlwind, and we are still trying to process most of the information. 

    Zachary's sclerotherapy went very well.  He was actually in surgery for almost two hours, and they made three injection sites in his lower cheek area.  I really feel that attacking smaller sections during each procedure is going to prove to be the best course of action for the immediate future.  Zach did have some swelling and bruising, but it was no where near the usual trauma he experiences.  This may mean more surgeries, but at least his recovery won't be as taxing on his body. 

     

    Zach underwent a sleep study on the 14th.  Of course, he didn't snore like he does every other night..plus they had his head elevated, which I think really helped him out.  We recieved the results today.  We are so thankful that his oxygenation and ventilatitn both came back normal.  The polysonogram did not show evidence of any significant obstructive or central sleep-disordered breathing.  Periodic limb movements of sleep were seen during the night.  Only a few of these were associated with arousals.  A few questionable EEG wave forms were seen.  The doctors recommendation was to defer further management to Dr. R (ENT).  They recommend getting a ferritin level and if it is less than 50 ng/mL, would recommend starting a multivitamin with iron.  They also would like a more detailed history regarding restless legs and periodic limb movements during his sleep.  He also needs further management regarding need for an evaluation of EEG by his primary pediatrician. 

    I am not 100% sure about all of this info, we will just have to wait until we have his next appointment.  ENT is also working on writing a prescription for a hospital bed.  This has been discussed many times by both surgeons.  Hopefully we will have some answers soon.

    Zachary also saw a crainofacial orthodontist.  He confirmed that Zachary has a collapsed left jaw and a crossbite.  Instead of chewing in a circular motion, he chews up and down.  When I actually saw his bite, I was really shocked.  I feel like we could've prevented some of the damage much earlier.  Thinking back, when I usually look in Zach's mouth...it is wide open and I am looking for malformation.  His lip covers most of the view of his teeth on the left side, so I guess the problem has been hidden well.  I have attached a picture in his photo album that shows the bite.  Short term, Zach was told we could either do a splint or plastic teeth.  Zach decided on the plastic teeth.  Basically, they will look like real teeth, but just snap on over his existing teeth.  It is slightly more cosmetic, but will also help protect his teeth.  Jaw surgery will be a necessity, however, the trick will be to find the right time to do it.  His malformation has to be under control, and puberty can also play a huge factor in its success.  We will continue to follow up with this specialist each time we go to ACH for another surgery.  His plastic teeth pieces will require another three visits for the molds and fittings.

    Zachary is doing good with all of the new information we obtained during this visit.

    He had his freshman orientation last Friday!!!  Marissa and Zach started volunteering at the Waynesville Animal Shelter yesterday.  They absolutely love it!!!!!

    I have a lot to update on Zach's fundraiser, but am going to wait until we get some additional information later this week.  We are going to wrap it up next Monday, September 3rd. 

    Thank you to all who have donated and helped in sharing Zach's story to spread much needed awareness! 

    Have a wonderful night!

    Love,

    Shelley;)

  • Written Jul 29, 2012 8:31pm

    Good evening:)

    I hope everyone is having an incredible summer.  So happy that we FINALLY got some way overdue rain today!

    Zachary has been enjoying his summer in Wisconsin with his dad, Stacy, and our families.  We will be picking him up in a week and a half. 

    It is hard to believe that he will be in high school this year...it just doesn't seem possible.  Time sure does fly!!!

    After we pick Zachary up from Wisconsin, we will be travelling straight to Arkansas. 

    He is scheduled for a sleep study on the 14th of August, an appointment with a craniofacial orthodontist on the 15th, and he will undergo another sclerotherapy on the 16th. 

    Our plan was to allow him to have a good summer, surgery-free.  Hopefully he will be all healed up before school starts on September 4th. 

    We also recieved some more very sad news... Zachary's nurse, Diane, has been offered an amazing job and will be taking a new position at ACH.  This is a promotion for her, and is such a blessing for her family!  We are so happy for her new venture, but sad she will no longer be a part of Zach's disciplinary team.  It will not be the same losing both Dr. B and Diane...especially since they have been with Zach since day one.  I know he is in good hands...but we are really going to miss them sooo much!

    I want to take a moment to thank everyone who has shared Zachary's story, and to all of those who have donated to his efforts to raise $5000.  All money raised goes directly to VBF and will allow families that cannot afford treatment/diagnosis to attend the 2012 VBF Conference.  It costs a total of $500 to send just one family.  Zach's goal this year is to raise enough money to sponsor ten families.  Yesterday, Salon Coccole in Lake Zurich, Illinois made an amazing combined donation from the staff and guests of $800.00!!!!!!  (Thank you, Stacy:))

    If you would like to donate, please go to the following link:https://birthmark.ejoinme.org/MyEvents/VBF2012ConferenceFamilySponsorshipPage/VBF2012ConferenceFamilySponsorshipPageSignup/tabid/349672/Default.aspx?joinme=14808

    Zach was interviewed for the Lake Geneva Regional News, and they ran a story on him last week.  The article was extremely well written!!! Unfortunately it was not published on their website, so I do not have a link to share.  When Zach gets home, I will share the story.  His dad was able to get us a handful of the newspapers. 

    We will keep everyone posted on what we learn from his upcoming appointments, and how his procedure goes. 

    We have a busy year ahead of us...Michael and Marissa are coming home on Tuesday...that means THREE kids in highschool this year:)...  We are so excited to have the three of them together again! 

    Thank you all for your continued support and compassion.  Have a good night!

     

    Love,

    Shelley  

     

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Healthcare Facility

Arkansas Children's Hospital

Little Rock, AR
United States